ANA super high, CD 57 super low, still no answers...

[curiouser85]

I’m a 27 year old woman and my health has been declining for 4 years now, after I had something “like Mono (Epstein-Barr Virus) but not quite” to quote my then-doctor.

My Symptoms:
DAILY HEADACHES/CHRONIC MIGRAINES – for 2 years I have had headache all day every day. I also have migraines up to 15-20 days a month, (aura, photophobia, nausea/vomiting, etc).

EXTREME fatigue - I have since been diagnosed with Hypersomnia/Narcolepsy in 2011.

Psychiatric problems - depression, anxiety, BRAIN FOG.

Hand/eye coordination difficulties - for example, reaching for a handle and punching the cabinet door instead

Body/joint pain

Skin problems – recurrent folliculitis, and in Sept 2012 I grew a warm, raised red rash on my arm, back, &side  

My ANA test = 1:1280 Homogeneous pattern. I was told I have 3 out of the 11 markers for Lupus, and you need 4 to be diagnosed.

I found a LLMD and had IgeniX lab work done. The ones that were abnormal were:

CD57 NK Cells Absolute Count = 15
CD57 NK Cells (% Lympho) = 0.70

I’m still not sure what this all means – From what I understand:
A high ANA = an autoimmune dysfunction (and 1:1280 is pretty damn high)
A homogeneous ANA pattern can mean it’s  Drug-Induced Lupus (??)
A Low CD57 count is seen ONLY (???) in people with Lyme or HIV – have they checked for people with Lupus/other autoimmune problems?

What I’d also like to know is:
Are constant headaches/migraines and/or psychiatric problems common for people with autoimmune disorders?

Any responses/suggestions/support would be wonderful and deeply appreciated!!

Best,
C

[JackieCalifornia]

Ah, great minds all thinking alike!  This is a good omen.  

As I recall, the SPECT scan was utterly uneventful, just lie down and let the machine do its thing.  At that point in my illness, lying down was about the *only* thing I was good at.  :)

I like the sound of your doc -- DO keep us posted -- !

[Robyn072]

Thanks Jackie.  Great info again.

I am booked in to have my SPECT scan in 2 days. I am looking forward to seeing the results of this one.  Yay! Go the LLMD's who are on the ball.  Even better to have one who has been through it all himself.  Wow, compassion.....makes a difference.

I think my LLMD must follow Burrascano's guidelines because he has given me His diagnosing checklist to fill out (even though we had covered it all in our conversations).  I will take a look at it myself when me brain is feeling a little less foggy.

Thanks again, you are such a gem!

[JackieCalifornia]

If it hasn't been mentioned already, MRIs are less helpful in diagnosing Lyme than a SPECT scan.  

SPECT [Single Photon Emission Computed Tomography] doesn't show just indistinct fuzzy areas that could mean several things, but instead shows areas of low blood flow in the brain, which is a symptom specific to Lyme, due to swelling that takes place in the Lyme-affected brain.  Only LLMDs tend to use SPECT scan.  My LLMD was pretty impressed with what a mess my brain was.

I don't recall if anyone has mentioned to you Burrascano's guidelines, which are posted on the ILADS website.  It's long and technical, and a bit meandering, but I found it very helpful even if I didn't grasp all of it.  I like knowing what my docs are thinking about.

[Robyn072]

I had been diagnosed with EBV, CMV, HHV6, Ross River Fever and a positive Rheumatoid Factor 12 years ago.....17 years after my lyme tick bite.  I have only just been diagnosed with Lyme this year and fits in with everything everyone is saying here.

I also had 2 years of headaches from Feb 2008- Feb 2010.... The needle on my haystack at that time was a very stressful job, on top of a household of 6 with Lyme disease.  I had all the tests, MRI's and they never pin pointed the cause....just said it must be depression (even though I wasn't depressed). The neuro I saw did prescribe Vit B2 for them at the time....can't say if it was that or leaving my job which helped.

[Robyn072]

Hey Ricco,

It would be interesting to know what your Cd 57 is. Mine was 87 which fits perfectly within the neuro lyme category and the Aussie Lyme being mostly neuro like Europe.

Thanks for that info on CD57 Juttin, I hadn't heard about those variations before.

[youvegottobekidding]

Thanks v much for sharing this info and link, it's v interesting.

[JackieCalifornia]

I've suspected that CD57 is one of those markers that is useful if it indicates an abnormality, but its normalcy doesn't eliminate the possibility of infection.

In other words, it's a data point that can be helpful but is not the "yes/no, go/no go" marker for diagnosis.  My doc was keen on CD57 but never talked to me about it ... I think he was data-gathering overall at some level.

[Ricobord]

Thank you for the link.  I had no idea the Cd57 level could vary so much during the day. That is a huge variance.

I never had mine tested. I was always curious what it was.  Reading this slide show, it looks like it may or may not have been useful for me as I am a neurologic patient (in general, neuro patients had higher counts).

[Juttin3]

The cd 57 was just spoke about at the boston lyme convention. It was said that the cd 57 range can be from like 11 to 160 in the same patient throughout the day. Certain times of day number can be lower or higher.  Morning could be lowest and afternoon highest.  Here is a slide show about the cd57.  

http://www.ilads.org/media/boston/slides/savely-sh/savely-sh.html

[youvegottobekidding]

Hi!
Excellent advice above regarding lyme testing, I'd stronly advise you to follow up on that.

Yes Lyme can cause ANA titers to be high. I think I read one in ten patients with lyme develop autoimmunity.

Since taking vit D I have got a much lower level of overall inflammation and in improvement in a lot of symptoms. I don't know who to pick out which symptoms were lyme adn which were autoimmunity, though. But I have had blod tests which showed much lower ANA titers, which is the main proof of course.
You don't get sudden results, it's  a gradual continuous improvement.

[JackieCalifornia]

You're quite welcome ... I just re-read what I wrote, and in some places I said 'stars' when I meant '+' signs.  

The stars (*) mean those bands are most related to Lyme, and the most significant to look at when considering a diagnosis of Lyme.

The plus signs (+) show the strength of the reaction for that band, and IND means 'maybe yes/maybe no', but a Lyme doc usually reads an IND as a weak +, since it's obviously not a minus.

I think you got the drift already, even tho I wasn't being clear.  Let us know how you do!

[curiouser85]

Thanks so much, Jackie for all the info and advice! I have been wondering what all these numbers mean, and this is incredibly helpful!

[curiouser85]

Thank you so much for all your advice! I'll definitely be getting a second opinion!

[JackieCalifornia]

About your tests and the way the doc dismissed you ... I'd take the tests (always keeping your own set of all test results at home -- you might need them later and doc's offices are not big on making lots of copies later, so you don't know if they gave you everything) -- and see another doc.

I keep a list taped to the wall of what the different bands mean (taken from the website truthaboutlymedisease [dot] com). I have read that any reaction at all -- whether IND [indeterminate] or stars -- is meaningful to a doc who knows how to read them in conjunction with your symptoms and history.

IgM means a more recent infection; IgG means an older infection, but both are relevant.  They just measure slightly different antibodies your immune system is making.

The more stars, the stronger the reaction, but they should all be counted, because they are measuring your immune system reaction to the presence of Lyme bacteria, and after a while the immune system figures it's done its job and trails off making the antibodies.

As to your positive and indeterminate bands (whether IgG or IgM):

30 kDa -- unknown; probably an outer surface protein, meaning a protein on the outside of the Lyme bacteria

31 kDa -- outer surface protein A (OspA) is specific for Lyme -- meaning only Lyme will cause a positive here

34 kDa -- outer surface protein B (OspB) is specific for Lyme -- meaning only Lyme will cause a positive here

39 kDa -- a major protein of the Lyme bacteria little whiplike tail -- specific for Lyme

41 kDa --  could be Lyme but could be another spiral-shaped bacterium

58 kDa -- unknown but could indicate Lyme

83-93 kDa -- specific to Lyme, probably part of its membrane

So, yeah, I'd find a Lyme specialist without delay.

[Ricobord]

Yes, some Lyme patients show a high ANA, but not all of us.

I agree that you need a different LLMD.  An Indeterminate result on a Lyme specific band can be significant when there are Lyme symptoms present.  The IND result means the lab technician saw something on that band, just not enough to show a positive.  Some LLMDs consider an IND as a positive.

Given your multiple IND results on Lyme specific bands, I wouldn't look at your results as excluding Lyme. Not at all.  With an antibiotic challenge  (take an anti-Lyme abx for 2-4 weeks and then retest), one or more of those bands could easily jump up to positive.

Many late stage Lyme patients don't show clear cut positives because Lyme suppresses the immune system.  Lyme is also very good at evading and hiding from the immune system, resulting in a drop in antibody production.

Find a new doc and ask for a second opinion. You might also inquire about an antibiotic challenge. Find a local Lyme support group and ask them for recommendations.  They are invaluable, as they know who's good and who isn't.  

[curiouser85]

Thanks for your message! I did get a lyme test done, a bunch of them actually, and I guess I'm negative - there are some IND and a few positive but my doctor didn't address what that meant with me.

I hadn't heard that Vitamin D can help! Thanks so much for that info! Does it reduce your autoimmune symptoms/make you feel better?

I have been reading a lot of things online about autoimmune disorders and symptoms, but none of them fit my symptoms as well as Lyme does. It's all pretty confusing though... Lyme can cause a high ANA, correct? Lol I'm still not even sure about that!

Thanks again!
C

[curiouser85]

Thanks so much for your comment, Ricobord! I honestly am just making that connection with EBV in my mind now to my ongoing health troubles, thank you for confirming my suspison that EBV can be exasserbated/retriggered by Lyme - it makes sense.

I did get a Western blot done - the results are:
IgG WB: (18, **23-25, 28, 45, 66, **83-93 were all negative)
30kDa +
**31kDa IND
**34 kDa IND
**39 kDa IND
**41 kDa ++++ (apparently this means there's some kind of flagella in me?)
58 kDa +

IgM WB: (all others were -)
**31 kDa +
**34 kDa IND
**41 kDa IND
**83-93 kDa IND

The doc didn't explain any of this to me, just said I was negative and handed me a copy of the results on the way out the door. He kinda *****.

Does this make sense to you? Any insight would be very much appreciated!!

Thank you!!
C

[curiouser85]

Thank you for your message, mojogal! I have seen a LLMD I'm not too impressed with, so I think I'll find another on that site you suggested.

Thanks so much for the advice! :)

[youvegottobekidding]

The symptoms you described sound an awful lot like lyme.

When you mentioned Igenex, did they actually test you for lyme and find a negative result? As far as I know, a negative from Igenex would be pretty reliable.
If they didn't test specifically for lyme, you do need to get tested.

Those ANA titers are really high. Have you been reading up online about the various antoimmune illnesses and signs/clues of them.?

They never figured out what my ANA antibodies are exactly. Autoimmunity is relatively common in people with longish term lyme and I think it can be caused by some of the co-infections as well. All I know is that all autoimmune conditions can be reduced in activity/severity by taking vitamin D. I am on 2000 IU daily (prescribed by doc) adn my ANA titers have been fairly close to normal since I have been on it.

However I should emphasise that my ANA titers were never as high as yours by a long chalk so I would definitely do some homework there.
Have you posted on the autoimmune section of Medhelp?

[Ricobord]

I also had mono-like symptoms earlier in my disease.  I kept thinking my bouts of overwhelming fatigue, malaise, and brain fog were mono relapses. Lyme can suppress the immune system to the point that EBV flares up again, sometimes enough to test positive.  Usually these patients feel especially sick as they have Lyme and Mono at the same time.

CD57 is so far known to be low only in HIV and Lyme. Lyme is known to mimic Lupus as well as several other autoimmune disorders.  Sometimes it is convincing enough that a Lyme patient qualifies for a diagnosis for Lupus, MS, et.al.  While the immune suppressing treatment for autoimmune disorders can help in the short term by reducing inflammation, it generally makes a Lyme patient worse by allowing the bacteria to reproduce more freely while the immune system is suppressed.

Surely an LLMD would have done a Western Blot...Did you get one?  What were the results?

[mojogal]

Hi,

This could very well be Lyme. I had all those symptoms and was MISDIAGNOSED with lupus and MS. Lyme is the great imposter and a low CD-57 shows this.

I am still ill so others will write more but you need to find a Lyme literate Doctor, LLMD as soon as possible.

Go to our association, ILADS dot org and email them for an LLMD near you.
Bring all your test results. Read things on that website.

The sooner you go, the better. Their tests and treatments are different then mainstream doctors.

Good luck. Feel free to ask more questions here, everyone is supportive.